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Due to massive inflammation and the inability of NSAID's to touch the pain/swelling, my doctor wants me to do a (short) but intense course of prednisone. Has anyone had any luck with this? Her thought is to bring the inflammation down so that the mino can target the infections.
I need relief…nothing is helping…indomethacin, naproxen, ibuprofen, alka seltzer gold, baking soda, vitamin c, curcumin, msm, baths, you name it, I've tried it.
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
I loved prednisone and had great luck on it. I did a taper starting from 40 mg and tapered down to 5 mg where I stayed for several months until the minocin really started helping. After awhile I got tired of the side effects (mostly trouble falling asleep and ADHD type feeling) but it sure helped me make it through. When I finally tapered off the the prednisone I switched to an every other day dose and that was much easier for me than just doing a little every day. Good Luck!
KelliI, too, have had good luck with prednisone which I have been on for about 2 1/2 months – I started at 15 mg and after about 6 weeks weaned down to 2.5 mg but then flared and now am on 10 mg which I hope to wean down once Minocycline kicks in, which I have been on for a month now at 50 mg MWF (100 mg gave headaches). Even though prednisone works, I do really want to eventually wean off of it, but have to use to function right now. I don't really have any side effects and I sleep fine at night, maybe a little jittery during the day and more likely to be grumpy, but all in all, it has been fine. I used ibuprofen for almost a year until it didn't touch my flares and had to go on prednisone.
Hope this helps.
ReesaK
RA – 4/09. Comprehensive Lyme test sent on 06/14/10, have to wait a month for the results:doh:
I was on 10mgs of pred for about 4 yrs….I tried to wheen off of it off and on …it did the job but unfortunately with cytoxan/prednisone/ap and other sundry drugs…my pancreas was damaged enough to cause my glucose levels to hit rather high….so..now I'm on lantis for diabetes…..not alot but it was damaged enough to require me to go on it……so..now I'm trying to warn people that IF you do go on pred…watch your glucose numbers closely…
Steve
frhorngal – the historical approach to pred was, if necessary, to use a maximum of 5mg and for as short a time as possible because it is immuno-suppressive. Perhaps you also need to discuss with your doc having a wash-out period from the abx before re-starting. I noticed that your starting dose was very high and am wondering whether this may have been too much for your body. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thanks for your responses…I'm so nervous to try this drug but I feel it's my only hope right now.
Lynnie, the abx washout is what got me into this mess. When I was off of doxy, my ankle swelled up to the size of a cantaloupe and just won't come down. We started my mino dose very slowly and I've been working my way up with little or no change in my symptoms.
It's only a 12 day course…40 mg for 3 days, 30 for 3, 20 for 3, 10 for 3, then nothing…hopefully this will reduce some of the side effects. I'm praying for a miracle at this point. I'm hoping this will bust the inflammation barrier and let the mino work it's magic.
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Frhorngal,
My daughter has a long list like yours of things that have never helped her swelling, and we agreed to try pred for the same reason you are.
It has been added to her list of things that never helped her swelling.
Her sedrate is normal off pred, but it did take her CRP to normal. That was the only positive change we saw.
I think there is also a positive if it doesn't help, in that you can discontinue it easier than a patient who gets great relief.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
[user=414]frhorngal[/user] wrote:
It's only a 12 day course…40 mg for 3 days, 30 for 3, 20 for 3, 10 for 3, then nothing
Unfortunately I can practically cut and paste Suzanne's response. My son also has a long list of things that has not helped the swelling in the joints of his fingers at all. One of our doctors was pressuring us for months to try prednisone, and we finally agreed to a course similar to the one you describe above except a bit longer: 40 mg / day for one week, 30 mg for the second week, 20 mg for the third week and 10 mg for the fourth week. Nothing happened at all.
I hope that you will have positive results. Some things that don't work well for one person, turn out to work wonders for someone else.
Hi Frnhorngal,
Just wondering which LLMD you are seeing for your Lyme disease? It's kind of concerning to hear that a Lyme doc would prescribe prednisone, even a short course like this. With Lyme, any form of immune suppression may provide short-term relief, but will only allow the infections to run rampant. :sick: Even without Lyme in the picture, I'm not sure how a short, high, tapering course of pred would help…the rebound could be monstrous.
Are there any more natural things you've tried yet to bring down your inflam? E.g. FIR sauna, liver/GB flushing, coffee enemas, systemic enzymes, etc?
I know I'm playing the “cautious” card here and others have had success, but chronic Lyme is such a unique kettle of fish, it would be a shame to set yourself back even more.
I'm just wondering if there may be unaddressed coinfections going on?
Please, only take what resonates here, because I can't be in your shoes…just offering some possible alternative suggestions, if you are looking for these.
Peace, Maz
I'm a bit boggled by all of it…in fact, my LLMD doesn't know why I am a non-responder to treatment…we've addressed candida, explored co-infections, tested for leaky gut, intestinal permeability, parasites, bacteria levels, all with no answers…we've tried virtually every pain relieving supplement (too many sensitivities.)…I react to every probiotic, even the hypoallergenic pharmaceutical grade ones with single strains, Systemic enzymes don't touch it, LDN is a no, acupuncture didn't work, I have a TDP mineral lamp, can't do the olive oil/lemon drink because of food sensitivities, other cleansing programs have ingredients I am allergic to…I'm gluten free, dairy free, soy free, corn free, nightshade free, sugar free, grain free…I've done water fasts, juice fasts, raw food fasts…I haven't done colonics or enemas yet…that scares me personally…
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Frnhorngal, what are your RA numbers looking like now? RF, anti-CCP, ANA, SED, cardio CRP, CBC, metabolic panel, LFTS? What is showing out of range, can you share?
Noticed you hadn't tried amoxicillin yet and wondering why your protocol wasn't changed up sooner when you starting going back downhill in 2009? I had a similar situation, because I got to remission on mino and zith in low doses (after a year of heavy Lyme protocols to hit coinfections), but when I suffered from drug-induced lupus, I had to switch out to doxy and zith. Doxy was not as effective for me, but as my doc gets my labs drawn every month, he was right on it and after a few months of this, he switched me out entirely to Moxatag and Diflucan (with low dose doxy at my request). The herx was monstrous for about 5 weeks, but it brought my anti-CCP down by about 40 points every month from that time on.
Interestingly, Brown would use the penicillins when patients weren't responding and he thought it was due to strep. It may well have been or it may also have been Lyme. Either way, the penicillins were very effective in Brown's protocols and got patients out of their funks. Moxatag is a brand, spanking new amoxy, too…formulated for extended release in the gut, so there is no rising and falling serum levels, keeping constant pressure on the spirochetes….just one dose in am and one in evening rather than 3 times a day. The Diflucan component of this protocol is good is two ways…keeps candida at bay, but also hits Lyme hard (as per Shardt protocol).
One final thought…have you been tested for drug-induced lupus with your mino or has it been suspected? If not, might be worth running the labs just to rule this in or out. It's quite rare, but it can happen with extended use of mino and very worth just checking it in instances where you've been on it a while and starting to go backwards.
Really feel for you Frnhorngal. You really have run the gamut trying to work this out. I'm just wondering if a protocol change is needed here or something undiagnosed is going on (e.g. bartonella?).
Peace, Maz
PS There are ways to do colon cleanses without seeing a colonic specialist. Also, what part of the lemon/olive oil detox drink are you sensitive to?
Hi Maz,
My numbers have stayed the same for the most part, but I haven't had any labs done recently. The mino is a fairly new introduction…I've been on it for about 8 weeks now with no change, not even limited herxing (or maybe I'm just not able to recognize the signs anymore.)
The ironic thing is, my sed rate, ANA, CCP, etc. are just over the normal range…elevated, but nothing is off the charts. LF is fine. Even my RF factor is low. It's all so bizarre. I guess I just don't test well!
I wish I could do the penicillins, but I am, unfortunately, allergic. I'm currently on the Shardt protocol (diflucan and mino) and was going to be incorporating a pulse between azithromycin and mino when I finished that. My doc just wants to get me some relief…she's as reluctant to prescribe prednisone as I am to take it…she's not a fan of the drug, at all…bartonella and babesia tests came back negative (done at a reputable lab).
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Frhorngal – I too am allergic to penicillin and I've often wondered if it's the reason I too am a non responder. I've been on pred for 2 years and have gone from 5mg to 2.5 but that seems as far as I can go without any secondary pain relief. I have a clinical Lyme dx and have tried 2 protocols which so far have just increased my pain levels. I too have done all the types of secondary testing ( gut, allergies) like you talk about, but to no avail. My last stop on this road is LDN which I plan to start soon. I wish you alll the best in getting to the bottom of things. if you follow the pred routine your dr. says, please get an NSAID or something for the monster herx you may get tapering off. I truly understand the situation you are in, and support whatever decision you make. Best of everything and feel better!!
[user=414]frhorngal[/user] wrote:
Hi Maz,
My numbers have stayed the same for the most part, but I haven't had any labs done recently. The mino is a fairly new introduction…I've been on it for about 8 weeks now with no change, not even limited herxing (or maybe I'm just not able to recognize the signs anymore.)
The ironic thing is, my sed rate, ANA, CCP, etc. are just over the normal range…elevated, but nothing is off the charts. LF is fine. Even my RF factor is low. It's all so bizarre. I guess I just don't test well!
I wish I could do the penicillins, but I am, unfortunately, allergic. I'm currently on the Shardt protocol (diflucan and mino) and was going to be incorporating a pulse between azithromycin and mino when I finished that. My doc just wants to get me some relief…she's as reluctant to prescribe prednisone as I am to take it…she's not a fan of the drug, at all…bartonella and babesia tests came back negative (done at a reputable lab).
Hi Frnhorgal,
Sorry about the penicillin allergy. I know how you feel…mino is out for me and it was my miracle abx. 🙁
Okay, so the thing is that there are so many strains of babs and bartonella that they really have to be clinically dx'd, as it doesn't matter which lab is used…there is no good test for coinfections and it's hit and miss. I just don't see anything in your past protocol that includes a bartonella treatment and this could be the missing link. I don't know, just a suggestion. Bartonella has been tied to inflammatory rheumatic conditions of “no known cause,” and there is a LLMD rheumy in Maryland who has developed a new test for bartonella and finding that 20% of his rheumatic patients have bartonella. Treatment for this infection would be a flouroquinolone, like levaquin or cipro, or rifampin.
Just an idea, but wonder if it may be worth checking into? Maybe doing a therapeutic probe with one of the above abx to see if you get a response?
Lizz's idea to look into trialing LDN might be a good next step, too, to help modulate your immune function.
Also, would your doc be open to consulting with another LLMD in your case?
Peace, Maz
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